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Not making red blood cells

This topic has 3 replies, 1 voice, and was last updated 15 years, 10 months ago by poppyshope.

Viewing 4 posts - 1 through 4 (of 4 total)

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July 6, 2008 at 9:40 pm #21017

Warren Rich
Member

I was on a Celgene protocol at Wake Forest but it did not work. My bone marrow is making very few red blood cells so I am living on transfused blood. My Dr. at Wake says I don’t have any options that he knows because I have been on Dacogen and the protocol. I can’t go on Voronistat
Does anyone have any suggestions? My Dr. is going to check with MD Anderson and Dr. Silverman at Mt. Sinai.

July 8, 2008 at 2:09 am #21018

gj
Member

Hi Warrent

Sorry to hear about the issues that have come up.

Can they use VIDAZA or REVLIMID? Also can they use ARANESP or PROCRIT instead of the transfusions?

Also since you are becoming transfusion dependent you might want to have a discussion about EXJADE or iron chelation. Once you near your 10th treatment iron builds in your system and does not naturally flush so you have to take something to reduce the build up.

Just a few thoughts. Hope they help. Some of them I’m sure your doc has considered but may give you ideas to continue the search.

Wishing you the strength on this journey
greg

July 10, 2008 at 2:47 am #21019

jaxem
Member

warren
I’d make an app’t & go to Duke for an opinion. they can’t be that far a drive from you. Duke is more known for pediatric BM programs but they also do a lot with adults. good luck to you.

July 10, 2008 at 11:07 pm #21020

poppyshope
Member

Warren,
There is a Dr Estey- was at MD Anderson, now is at Fred Hutchinson, he is really great and will call you on the phone and do a consultation if you fax records. Also, what about Dr Eric Feldman at Columbia Presbyterian in NYC- after my dad had done everything that Sloan Kettering offered Dr Feldman was willing to see him and see what could be done- we were on our way to see him when my father passed away, but he did come down to the ER when we came in and was a very compassionate man. See what can be done and leave no stone unturned you don not always have to go there are phone consults and your doctor can also talk with the other experts on your behalf- they know that it is hard to travel with this disease… anyway, that is what hope is all about with this disease. My prayers are with you on this journey- jen
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